Although allusions to the importance of a good physician-patient relationship are present throughout the interstitial cystitis/bladder pain syndrome (IC/BPS) literature, qualitative analysis of patients' perspectives on the clinical encounter is lacking, particularly among women who are most commonly affected by IC/BPS. Therefore, we adopted a patient-centered experiential approach to understanding female patients' perception of clinical encounters.
We re-analyzed previously collected data from a qualitative study on patient flare experiences including eight focus groups of female IC/BPS patients (n = 57, mean = 7/group). Qualitative analysis applied grounded theory to index all physician-patient interactions, then thematically coded these interactions to elucidate common experiences of clinical encounters.
Women with IC/BPS shared common experiences of provider disbelief and pain dismissal. Discussions with participants demonstrated the extent to which these negative encounters shape patients' health care-seeking behavior, outlook, and psychosocial well-being. Appearing in more than one guise, provider disbelief and dismissal occurred as tacit insinuations, explicit statements, silence, oversimplification, and an unwillingness to listen and discuss alternative treatment. As a result, women adopted several strategies including: rotating specialists; "testing" physicians; self-advocacy; self-management; avoiding the stigma of chronic pain; crying; and opting for alternative medicine over biomedicine.
The prevalence of provider disbelief and pain dismissal among women with IC/BPS indicates a need to improve physician-patient communication, informed by the struggles, anxieties, and gendered inequities that female patients with chronic pain experience in their diagnostic journey. Results suggest that further investigation into the power dynamics of clinical encounters might be required.
International urogynecology journal. 2023 Nov 22 [Epub ahead of print]
Victoria L Brown, Aimee James, Jean Hunleth, Catherine S Bradley, John T Farrar, Priyanka Gupta, H Henry Lai, Jerry L Lowder, Robert Moldwin, Larissa V Rodriguez, Claire C Yang, Siobhan Sutcliffe
Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine, St. Louis, MO, USA. ., Division of Public Health Sciences, Department of Surgery, Washington University School of Medicine, St. Louis, MO, USA., Department of Obstetrics and Gynecology, University of Iowa Carver College of Medicine, Iowa City, IA, USA., Center for Clinical Epidemiology and Biostatistics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA., Department of Urology, University of Michigan, Ann Arbor, MI, USA., Division of Urologic Surgery, Department of Surgery, Washington University School of Medicine, St. Louis, MO, USA., The Arthur Smith Institute for Urology, Zucker School of Medicine at Hofstra-Northwell, Lake Success, NY, USA., Department of Urology, Weill Cornell Medicine, New York, NY, USA., Department of Urology, University of Washington, Seattle, WA, USA.